Hi all,
My name’s David, I live in Bedford in the UK and I came across this forum through an email from my daughter entitled “Dad – thought this website would be useful to you!” How right she was… the information here is immense – and I’ve only just scratched the surface with my reading here! My warmest thanks go out to those who run the site and all those who take the time to share their experiences, tips and tricks.
I had my first, full-on, burning, axe-in-the-head attack about 18 months ago and after only a couple of weeks or so was having three a day, every day. Being a ‘bloke’ I left it a while before going to the doc as “It will probably blow over…” Doctor visited and blood tests taken, I was relieved to be told that the answer to my headaches was that I had an underactive thyroid – take a few Thyroxine pills every day and everything will be rosy. You probably know where this is going…
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Many, many months followed with three of these horrendous attacks every day; each lasting over an hour and the doc assuring me that it was my thyroid and I should give it more time. Eventually I was referred to a Neurologist who I saw early January this year. He took very little time to diagnose CH (though organised an MRI scan just to completely rule out anything else) and wrote to my own doctor instructing him to prescribe Imigran injections and high-flow oxygen, while starting me on a Verapamil regime increasing every two weeks.
So; I’m still having three attacks per day – approx. half past midnight, 4.15 am and 5 pm – though Imigran or oxygen reduce them to around 15 minutes long (there seems to be no advantage in taking both at the same time). I’m now taking Verapamil at 960mg per day and have seen no positive effect from it yet but am assured that I will in time! I haven’t worked properly for about a year now, I’m self-employed so have no caring boss to give me sick pay, but I often just can’t face it and don’t want my clients to know me as “The photographer who bashes his head, cries, rocks and swears a lot” so I have to be very choosy about the limited amount of work I accept. Does that make me sound like a bit of a Diva? Ooh, I do hope so!
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A few observations / quirks:
- I’m suffering quite badly from the side effects of Verapamil, including passing-out regularly – I was recently sporting carpet burns on my face after falling down the stairs; but I can laugh about it now! I’ve learned to sit down about 1 ½ hours after taking the pills as that’s when I get my ‘funny half hour’! Advice and tips about dealing with the side effects would be most welcome.
- I went to Mexico on holiday and had 5 attacks during the 10-hour flight, each an hour long, then in Mexico had only 9 during the whole two weeks (with 7 completely pain-free days) then had 4 more on the 9-hour flight home and straight back to 3-a-day; though the regular times changed. I’m sure there’s an explanation for this involving time-zone or ambient heat or something!
- Alcohol does not seem to be a trigger for me (a bummer as I don’t drink much anyway!) but one sure way of giving myself a ‘bonus’ attack is by standing around outside in the cold for a couple of hours then going into a warm room.
- I’ve found that I have to hyperventilate for oxygen to work for me – but it’s fantastic; don’t know how I managed without it!
- I tried Immigran nasal sprays but they made me violently sick – so I just had the horrible head pain while my body was trying to turn itself inside-out. Not good…
- I’m shocked to find that my 15 months to diagnosis is actually a very short time and some sufferers take many years to get diagnosed!
- My wife, Amanda, is an absolute rock of support to me; so to all the other spouses, partners and friends out there who support a sufferer – I salute you!
So that’s me and my story; never really told to anybody before, so it’s been therapeutic writing it, even if nobody reads it! I often get quite miserable and feel sorry for myself and think “Why me?" but then I remember that millions of people die through lack of clean water and we’ve got so much that we flush our toilets with it…
David.